Monday, July 30, 2012

A Will and a Way

Through my observations of speech therapy with Kenny, I learn how our society of the past abandoned, even gave up on individuals with developmental disabilities, thus limiting their potential.  I realize the limited resources historically unavailable to children such as Kenny when he was a child, especially in various parts of the state.  I understand how family support, encouragement, and involvement are critical to helping their children successfully overcome the challenges of developmental disabilities.  We often hear the “no child left behind” motto related to educating our children.  When I consider the amazing journey and challenges faced by individuals I’ve met with cerebal palsy, such as Nicholas, and the resources available to them today, compared to Kenny who never received an education or much therapy, I wonder how so many others with developmental disabilities were “left behind” over forty years ago.

Kenny and I are the same age, forty-seven.  I have little memory of “special ed” students (as they were called in my day) in my elementary school.  Were they kept isolated from the rest of us or did they even go to school?  Known today as children with special needs, many are now incorporated into the schools, some in mainstream classes, most others in their own classrooms according to their challenges.  A few schools in our Owensboro community integrate these students somewhat, encouraging peer interaction and inclusion.  Interestingly, I notice a trend in my speech therapy observations where a few Campus members don’t know how to read, leaving our speech therapists to teach them the basics  of English that you and I learned in first grade.

In my observation, Michele Clouse, Kenny’s speech therapist, asks me to “interview” him with simple questions he can answer on his communication device.  The exercise provides Kenny practice using his device and finding the related answers on its menu.  This experience brought home the reality of the patience required when communicating with those who have verbal challenges!  Upon asking Kenny where he lives, I realize the excruciating silence that lingers between us as he searches and considers how to respond on his communication device.  I also realize once again how impatient I am and how I take for granted my ability to easily converse with someone with so little effort.

As Kenny searched for the response, I sensed in him hesitancy, perhaps even a lack of confidence as he seemed to struggle to find the correct menu option on his device.  In addition to his verbal challenge, Kenny has limited left-side vision which impairs him visually when reading the device menu options.  In what felt like an eternity between my asking the question and Kenny finding the answer on the menu option, I realized my naiveté in thinking Kenny and I would have a conversation similar to one I have with friends.  I felt Kenny’s frustration in his ability to answer quickly, his struggle to find the right menu selection, and perhaps, the pressure he felt to “perform” well to please Michele and impress me. Any impatience I had melted into compassion as I waited, listening to Michele gently coach Kenny with clues and reminders of abstract symbols or sight words.  My heart ached that people in Kenny’s life short-changed his ability to learn, and the opportunity of an education.  Then, a pang of anger swells at the injustices by a school system of the past: for not caring enough to find out why Kenny didn’t return to school, and for not encouraging his family to get him there anyway.  And, my heart simultaneously softens as I remember this man chose to face the added challenge of learning how to read after all these years so he may have a more meaningful way to communicate with the people for whom he cares, and the world.

When the human spirit wants to communicate, and there is a will, then there is a way.  Whether through body language, vocal sounds from the throat, behaviors, sign language, communication devices, notepads, you name it, one will find a means in which to communicate.  Parents figure out their newborn’s communication system of crying and each cry’s different meaning.  Helen Keller who communicated through what many misconstrued as unruly outbursts of behavior learned to communicate when given the tool of sign language, the patience and determination by Annie Sullivan to not give up on her until the day silence was broken with simple movements of fingers in the palm of a hand.  Christopher Reeve and Stephen Hawkins found the technology to communicate their life-inspiring messages to the world.

Individuals with developmental disabilities, especially children, simply need the tools, direction, patience, and most importantly, the faith and belief from those who support them in finding their voice - our speech therapists.  In finding their voice, the individuals we serve are empowered people to speak their minds and hearts, to ask for what is important to them and for them, to connect and relate with others, and to share that unique part of who they are with the community, and the world.  Just like you and me. 

Our speech department offers hope to those we serve on Campus and those in our outpatient services; a hope that one day they may be understood and heard.  My thanks to the department for sharing a small piece of their invaluable contributions to those we serve on and off our Campus!

The observations next take me to occupational therapy where I meet two sweet young women named Jamie and Jill.

In the Next Blog Entry:  Job Therapy - "Young Jamie seeks greater independence in all areas of her life. . . . in the several OT observations with Jamie and Jill, it involved bouncing balls, brownies, and a modified version of “Family Feud.”

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